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Well shucks, you come across as a smart and capable guy. Yeah, put on your Santa suit, why not. But figure out something cool. Think what you will do with your life if you get well. What is your promise? How many homeless or single moms or abused kids are you going to help to a better life? Tell people what they may expect from you in return for them putting you back on your feet. Get the local media to cover your gig. Hell, just do something. Your Neuro is just reporting events, not making them. Your 'probable, almost certain future' is pretty bleak. Get your dog, your girlfriend, your and her family and friends in action. You live in the wealthiest part of the world. I'm not saying it is easy, but you can do it. And once you are victorious, write a book about your CtrAltDel, make some money, turn your misfortune into a small fortune. If you were smart and persistent enough to make it through college, you can pull this off too. Need mental and moral support? I am willing to stand by you.

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Is there a place to get this treatment inside of the US but outside of a clinical trial? It seems from the federal website that the trials are over. I understand that it can still take years to get approved in the US, and Many folks with MS dont have years befor they become REALLY disabled.

"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

shucks wrote:Is there a place to get this treatment inside of the US but outside of a clinical trial? It seems from the federal website that the trials are over. I understand that it can still take years to get approved in the US, and Many folks with MS dont have years befor they become REALLY disabled.

Unfortunately no treatment facilities in North America will perform this procedure for an autoimmune disease outside of a clinical trial. (Interestingly HSCT is performed many thousands of times every year in the US for treatment of cancer. It is a well-understood treatment.) The only HSCT treatment currently being done for MS in the US is by Dr. Richard Burt at Northwestern in Chicago. It's a phase III clinical trial that they are currently recruiting patients. However, it is extremely difficult to be accepted to this trial (the vast majority of people with MS won't qualify). Additionally, even if a person were admitted to the trial, there's a 50% chance that they would be assigned to the control arm and not receive the HSCT treatment. To top it off most likely the patient would have to pay for it. I understand the cost is running close to $150K.

There is a separate phase III HSCT clinical trial that will also open up to patients at Fred Hutchison Cancer Reseearch Center in Seattle sometime around 2013 or 2014. That study is even more expensive on a per-patient basis compared to Burt's program. (This is also the protocol I received for my own treatment in Germany.)

It will eventually be approved in the US as curative treatment for MS following the conclusion of the phase III trial. Likely sometime around, or just after 2020. Then insurance will pay for it. But likely not before.

If someone wanted this treatment outside of a trial today, it would have to be sought overseas (as I did). I hope people will be careful and only seek HSCT treatment from a reputable & legitimate hospital experienced with the procedure. HSCT is a very serious & complex procedure (hence the cost) and treatment safety should be of paramount importance.

shucks wrote:Is the treatment for ms the exact same treatment for cancer? What would the differences be?

Another excellent question!

The basic BEAM treatment is the same except for one minor difference. During the (stem cell) mobilation phase the patient should take oral prednisone at 1mg per kg of bogy weight for ten days (starting first day of G-CSF administration) , then taper off with halfing the dose each day starting day 11 until the last dose taken is less than 10mg. (Steroid discontinuation should be done gradually to avoid a hypotensive complication.) This was done during the clinical trials to reduce the chance of T-cell mobilzation causing an undesired exacerbation or worsening of MS symptom(s).

Otherwise the protocol is the same, just as I did and everything worked out for me as desired.

If the treatment reboots the immune system, how could the T cells cause an exacerbation? I know it is written elsewhere but could you guys who have had it done let us know your edss before and now a good period of time after the treatment? From what I read here and elsewhere, the treatment slows or stops the progression in about 70-80 percent of people,m and a smaller portion have some improvements. Arent those similar to the results people are getting with Campath or cytoxin? I'm not trying to argue, just figure out why this super expensive treatment is considered by some folks to be the magic bullet. If that's what it is, I'm going to get it, but if it isn't, maybe I can wait till 2020. Myprogression has been pretty severe in the last 6 months, and worry is that Whatever i do I need to do NOW.

Thanks

"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

shucks wrote:If the treatment reboots the immune system, how could the T cells cause an exacerbation? I know it is written elsewhere but could you guys who have had it done let us know your edss before and now a good period of time after the treatment? From what I read here and elsewhere, the treatment slows or stops the progression in about 70-80 percent of people,m and a smaller portion have some improvements. Arent those similar to the results people are getting with Campath or cytoxin? I'm not trying to argue, just figure out why this super expensive treatment is considered by some folks to be the magic bullet. If that's what it is, I'm going to get it, but if it isn't, maybe I can wait till 2020. Myprogression has been pretty severe in the last 6 months, and worry is that Whatever i do I need to do NOW.

Thanks

Hi Shucks,

T-cells only cause exacerbations "before" HSCT, not following the procedure.

Unfortunately single-agent therapy (such as Campath) doesn't work as well as HSCT as noted in the following video by Dr. Richard Burt. . . .

The reason HSCT treatment works as a cure is becuse it renders the body's B- and T-cells antigen-naive. This is something that single-agent distributed (monthly) therapies (such as Campath or Cytoxan) cannot acheive. Only complete lymphocyte ablation (such as HSCT) can acheive this.

That's not to say that these are not good drugs. They are good drug therapies. Just that they don't work as well as stem call transplantation as curative therapy because they do not completely stop the underlying MS disease activity, as HSCT does. The nice thing about most people that have HSCT is that their underlying MS disease activity completely stops and people stop taking immunomodulator medication that is no longer necessary (such as myself following my own HSCT procedure).

So as Dr. Burt mentioned many people improve by 2 or 3 points in their EDSS score following HSCT. This statement mainly applies to RRMS patients. However, progressive patients can also often experience improvement. For my own (SPMS) case my underlying MS disease activity has stopped 100% and I have further seen an improvement (16 moths post-transplantation) of my existing symptomatic deficit of 40% (from EDSS 3.5 prior to HSCT, to currently 2.0 EDSS post-transplantation). Each patient experience may be unique.

What is the sterility rate in the procedure? My girlfriend and I have been discussing our future, and that could be a big deal for me. I dont see how to afford the treatment right now, though I'm brainstorming, but that on top of storing man juice seems rough. How about your testosterone issues george? Is that a common side effect? Thanks for the info guys. For those of you that are planning on the procedure, where are you thinking of, and how much is it there?

"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

shucks wrote:What is the sterility rate in the procedure? My girlfriend and I have been discussing our future, and that could be a big deal for me. I dont see how to afford the treatment right now, though I'm brainstorming, but that on top of storing man juice seems rough. How about your testosterone issues george? Is that a common side effect? Thanks for the info guys. For those of you that are planning on the procedure, where are you thinking of, and how much is it there?

Good questions on important topics. I wrote in detail about these issues as I faced them, here. . .

Here's a brief summary of the topics you bring up relative to my own myeloablative treatment. . . .

- Myeloablative HSCT utilizing BEAM chemo conditioning therapy causes permanent sterility in the vast majority of people. I expected this and I banked my sperm prior to the procedure. My wife and I are doing IVF right now working on our second child using the sperm I banked. I should know the (pregnancy) result by sometime in July but I expect that it will likely work. Certainly I don't expect any problems from my banked samples. They have already been verified as viable.

The non-myeloablative chemotherapy protocol (such as used by Dr. Burt in the MIST protocol) is not as destructive to cellular function as compared with my own treatment and likely many people will come through the procedure with their fertility intact. However, as opposed to the huge wealth of knowlege developed with myeloablative protocol for cancer treatment, the non-myeloablative therapy has much less documented data relative to the subject of fertility and likely the odds of (fertility) outcome are not currently well known. Even so, just to be on the safe side I would likely take the precaution of banking even with this gentler chemotheraputic approch. Actual fertility function can easily be confirmed following the procedure.

- Regarding testosterone. . . many fewer than 20% of myeloablative HSCT patients have a problem with this and loss-of-testosterone production is not a common side effect. In fact, it caught my doctors off-gaurd since they were not expecting this to happen to me. (My testosterone-producing leydig cells were severely damaged from the procedure and I currently have to take topical dermal testosterone replacement therapy (Androderm) to bring my testosterone back up into the normal range (>300 ng/dl)). I don't expect my testosterone production function to recover. However, I will say that other than the cost of having to buy the androderm, I don't have any problem with this HRT (its a rather safe therapy) since it is simpler, easer and much less expensive as compared to my taking Avonex before my treatment (that I no longer have to take following my HSCT). And I will say that I very much love not using needles to inject any medication today. A major improvement of my daily life being free of MS-progression. I'm personally totally OK with this trade-off since I consider it a small price to pay for curing my MS.

Regarding the same Testosterone subject relative to non-myeloablative (MIST) therapy. . . . . I would think that the chance of leydig cell damage risk would be very minimal and I would be surprised to learn of anyone treated with such protocol having a problem with testosterone production.

Did they remove your central line when you left the hospital? How long was it in for?

Hi Shucks,

Different hospital/treating facilities incorporate different approaches to the use of a central line. The main thing about aggresive chemotherapy is to ensure that it is properly diluited and distributed in the bloodstream close to the intake pulmonary valve of the heart. This ensures adequate blood dilution and diffuse distribution of the chemical agents to the the whole body at one time time. If such chemo agents were to be injected intravenously in a peripheral area of the body, probably it would cause excessive local cellur damage. So therefore, they want to be sure it is injected near the pulmonary valve that is directly downstream of the superior vena cava.

A "true" central line is used with many cancer patients receiving aggressive chemotherapy that is (minor) surgically implanted under the breast bone and is often left in for longer periods of time (such as months). The HALT-MS trial using BEAM chemotherapy utilized this central line insertion known as a Hickman Catheter as shown here:

The MIST trial in Chicago uses a simpler insertion line in the arm known as a Peripherally Inserted Venous Catheter (PICC) inserted through the arm vein that joins up into the Superior Vena Cava vein in the chest as described here:

I don't know exactly how long they leave it inserted in the arm as part of Dr. Burt's MIST trial as shown here (I'm sure that on Lisa's Hope website she probably indicates this information), but I'm reasonably sure it was removed before her hospital discharge:

As for my own treatment in Germany I received a PICC that is inserted in the jugular vein of the neck that also joins straight down into the Superior Vena Cava, with the (chemo) output just about 2cm short of the pulmonary valve:

I will admit to you that I had some apprehension in advance of the catheter insertion thinking about it. However, on the actual day I had it inserted it was rather anticlimatic and not really a big deal. The doctor that did it made the whole process easy and painless. I was anxious about the insertion process for no reason. It really was easy. It also made the hospital stay easier because they could draw blood samples from the catheter and I didn't have to get stuck continuoulsy with needles for the many blood tests. Overall, the PICC makes the procedure & treatment more "treatment & patient friendly." Really.

As for my own PICC they left it in for a total of only ten days (a shorter time as compared to the other programs) because the medical team in Germany is more careful/conservative and wanted to exclude it as early as practical as a posible source of skin entry point infection (why Germany has such a low complication & mortality rate). I'm a little embarrased to say that in the end the whole PICC matter for me turned out to not be a big deal.

My Chemo has just been turner on in Heidelberg Germany (BEAM protocol). I am elated knowing my disease is being eradicated as I type these words. Thank George goes for your support, education and inspiration.

Would there be any place outside of chicago to get the MIST protocol? The couple people who i've talked to who have had it done recovered pretty quickly as compared to the BEAM. I am just wondering if somewhere gave dr burt's protocol other than the clinical trial.

Good luck ASHER and please keep us posted.

"A gun is a tool, Marian; no better or no worse than any other tool: an axe, a shovel or anything. A gun is as good or as bad as the man using it. Remember that." -- Shane

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